Why Erleada?

So I've just started with a new oncologist at the University of Arizona cancer center here in Tucson. I was at Mayo Clinic in Phoenix last May where my CT and Bone scans showed my L4 had a spot and possible retroperitoneal Lymph nodes might also be metastatic. My PSA in May was 4.8. I was given a 6 month shot of Eligard in May. We were gone from Arizona for 7 months and had my PSA checked while away. July 7th, 0.3, Oct 7th, ) 0.4, Jan 7th, 0.3.
We are now in Tucson area so I decided to find an oncologist experienced in advanced, recurrent PCa which led me to U of AZ and Dr. Edward Gelmann. Mayo is 2.5 hours away and their plan was another CT and Bone scan. With PSMA and Axumin scans available down here and my PSA only 0.3, I didn't think CT/Bone scans was the right for me.
So I met with Dr. Gelmann and he said I have low volume mets and he recommended another 6 month shot (Lupron) and to add Erleada (Apalutamide). He doesn't think I need Taxotere right now either.
So I am wondering why Erleada? The co-pay for Erleada is $3,000/month but they have a nurse coordinator that finds grants and foundations that can reduce the co-pay to a fraction of that.
I am wondering if you think Erleada is the best or is it on par with Zytiga? I'd rather go with the generic version of Zytiga if possible.
Also, since I never achieved undetectable PSA on the 6 month Eligard shot, does that mean I have hormone resistant cancer cells running around?
The good news is the oncologist thinks I'll survive a long time!
Thanks, Don

PS, Gelmann was going to put me on Zytiga, but after I discussed Xtandi with him, he agreed to put me on it. Gelmann has always seemed open to discussion for me, so if generic Zytiga is better for you financially I would just ask him about it.

Don J, good to have both you and Mattum blazing the trail for me here in Tucson. Should I need to do more, I hope you won’t mind me leaning on both of you for answers. I have no Oncologist at this time. Wishing you the best.
Jack

DonJ - Are you on Medicare or similar? It makes a difference when one is looking for payment assistance.

My wife has been getting expensive Ibrance (BCa) at no charge from Pfizer as part of one of their programs for Medicare patients, going on the third year with annual reapplication recently approved. The pharmacy department at the University works on behalf of patients to apply for the appropriate programs and help collect the necessary paperwork like W-2's or 1040's for them.

Surprisingly, we thought we would never qualify for any programs as we are far from poor but we have had little or no earned income for a couple of years since retirement and they must weigh that heavily. We had to pay the first month which was $2850 after Part D insurance but have been good since then. I think I calculated the Part D annual total would have been around $11,000 since we would have passed all the Part D levels after a few months then just pay 5%.

Hello, DonJ ---

Appreciative of your posts. I see Dr. Kwon at Mayo Clinic in Rochester, Minnesota.

I have been on ZYTIGA (now the generic version ABIRATERONE ACETATE) for about 75 months.

My biggest question --- trusting in your doctor's vision --- what did your oncologist list as advantages or top reasons for choosing ERLEADA ?

I was just curious why that medication was uppermost in mind, for your case? That's the question that occurred to me when I read your post.

I would ask my oncologist to illuminate this question, if it were me. I see my oncologist monthly, which has paid dividends in my case. My treatment history is shown below!

We're all in this together!

My best to you!

CYCLONE --- # Iowa State University

Don,
The Lupron/Erleada should do a great job for you for a long time. As Dr. Gelmann likes to say, keep doing what you're doing. 😉

The pricing of these second line ADT meds is still mind numbing to me. I'm pretty sure all three meds are priced over $10,000 per month. Even with the manufacturer waiving $3,800, I'm sure they is still making a helluva profit.

I had my PSA checked on Feb 15th and it was down to 0.12, My liver is handling the Erleada with no issues so far. I was experiencing some heavy fatigue by late morning due to taking the pills at 8:30am. The oncology drug nurse suggested taking them at night which I started doing a week ago. I feel much better during the day. I still get fatigued but not as severe during the day as before. The only other side-effects are total body hot flashes. Similar to Lupron but I never had my legs get so hot as when on Lupron alone. Also get muscle pain and weakness from easy/moderate exercise. My body needs a good day to recover after a short hike or bike ride. So just trying to do something every day if it is just walking for 1/2 hour. But overall, it's definitely worth taking Erleada for the hope of delayed disease progression. Thank you all for the adding your knowledge and experience to this thread. It certainly has helped!
Don

DonJ,
Great to hear about the PSA drop. I also take my Xtandi after supper. It works out better for me that way. I also continue with my walks during the "cold" Tucson mornings.

I think Doc Gelmann would say to keep doing what you're doing. 😉

Great to hear, Don! I'm also in Tucson, BTW. Sounds like you have an excellent doctor and are whipping this thing!

Truly, DonJ --- your news is the BEST NEWS of the day!

I follow your posts and updates. You have documented your first-hand "news from the battlefront" experiences with ERLEADA --- a new weapon in the castle armory & your shared details are invaluable to all of us here.

Best of all --- you have remarkable and noteworthy RESULTS!

U-N-D-E-T-E-C-T-A-B-L-E !

Best news of the day! Made my day, reading your latest update!

CYCLONE - # Iowa State University